Behold the power of Juice Box

Target had a good sale on juice boxes, so we stocked up last week. Since then, the kids have been eyeballing the juice boxes because I told them they were only for school. So, last night Alex announced that he was ready to begin school even though he had previously explained he would not start until September. At 9:30, he said, "Let's start school now!" Immediately suspicious and always a prankster, I said, "okay, let's go." As I was continuing with the ruse, Alex asked, "Can I have a juice box now?" BUSTED! LOL!

This morning, Alex was ready to go until I told him he could have his juice box at break and not before. He developed a sore knee that could only be treated with a juice box. The flow of tears convinced me that we needed to start on a positive note this year. After a frank discussion about how we needed to take homeschooling very seriously and do our best, I gave him the juice box. So far, so good.

Who knew that juice boxes had medicinal properties?

So, what do we do now?

Our health insurance covers speech, OT, and psychological services for rehabilitative purposes only. ADHD is considered a mental health issue (insert eye roll), so the dr's visits for that are not covered either. Thankfully, we have a primary care dr that is handling that prescription now that we have paid a psychiatrist out of pocket to confirm the diagnosis of ADHD. (Yes, even though 2 developmental pediatricians, a neuropsychologist, a numerous other professionals can diagnosed and confirmed it.) Feel free to insert yet another eye roll here. In fact, just keep them eyes a-rollin'.

Our county provides these services on a sliding scale to residents through 3 major agencies. Back in February, I applied for help through the largest one. Alex was accepted as a client, and our worker said she would be in contact with us to get Alex set up with speech, OT, and psychological therapy through the therapy center where Alex currently gets OT. A few months ago, the worker called and said that the therapy center was understaffed and not taking any more clients, even though Alex was already established. A few weeks ago, I called her back to check on things, and she said that the center was ready to accept new clients. She was going to get it set up and call me back in 2 days. She never called. In the meantime, Emily got sick, and then she had surgery--I forgot to call. I called yesterday and got a bombshell. The county has decided not to provide services for children who can or are getting services in the public schools. The worker said she didn't know how she was going to tell her families this news so that is why she didn't call.

Things with the local schools continue to deteriorate. The case loads for the therapists are huge, and they are spread thin--most of them visit multiple schools every week. Alex wasn't getting what he needed there anyway which is why I started this process in the first place. I just don't know why all this is happening or what to do now.

Post-surgery

Since my last post, Emily had a visit to the ER because of stomach pain. She also had her first ambulance ride to a children's hospital to rule out appendicitus. Thank the Lord it wasn't that! She was, to quote the ER doc, "Full of stool." So one milk and molasses enema later, Emily was fairly well cleaned out. She still had a viral pneumonia though and tonsils that looked like raw hamburger. The test results were negative for mono. (YAY!)

We went to the ENT to check her hearing and have her tonsils looked at. He scheduled her for the first available T&A surgery which she had last Monday. He also scoped her airway and found damage from GERD.

She is recovering very well. Her brother and sister are in VA this week, so she has been able to stay quiet and have Mommy all to herself. It has been great, but I don't think I ever want to see another Baby Einstein or Fraggle Rock video ever again! LOL!

I'm giving up.

Emily's IEP meeting was anything but individualized. I didn't sign it. I contacted the dev pedi's office and their advocate called me several days later. She basically told me she could observe Emily at school, but that was about it. She would not get into anything legal, so no due process or mediation meetings. So, in simpler terms, she wasted my time. I called the AI director to ask her what happened with her plans to create an "Emily program" because what was on that piece of crap IEP had nothing to do with helping Emily with her specific issues. She passed the buck to the school director who finally called me today. She did tell me that they will re-evaluate Emily in October after they have had a chance to get to know her. Whatever. I can take them to court and waste more time and money, or I can go the private route and get her therapy that will actually make a difference. Getting this worked up about it just makes it harder to be the parent that I need to be. Last week was a fabulous week with Emily. I feel like we really connected. I can't even describe how wonderful those 4 days were. It was balm for my heart.

The downside, and I think it is funny in an ironic sort of way, Jason and I were talking about how wonderful the last few days with Emily had been. I half-jokingly said, "I bet she's getting sick." Dangit--I hate being right all the time. Emily spiked a fever on Friday morning, and she has been baking at 103-104 ever since. She is now constipated and feeling wretched. She has not slept more than an hour at a time in the last 3 nights. I am like the walking dead, existing on coffee and brownies. Beware the sleep-deprived, pmsing, uber-crank hopped up on caffeine and sugar!

She had bloodwork today that looked relatively good, but we are still waiting on the final mono answer and her lead levels. The dr wants us to rule out any hearing issues as well. Adding a trip to the ENT to my mega to-do list for this week. Hopefully the next time I remember to blog I will be back to my usual Susy Sunshine self.

IEP on Thursday

So, on Friday, Emily's teacher called to tell me that the the school wasn't ready for Emily's IEP, and that they were not having it this week. I got a call today that they ARE having it--on Thursday. The woman from the school was recapping and said something like, "She is being labeled as Speech and Language Impaired, right?" I told her I thought that was still up for discussion.

I am so sick of fighting! Why can't they just do the right thing? I don't care if they don't have the resources. I can get private resources--maybe--if she is appropriately labeled. She meets for AI both from the medical and academic sides! I should have known when during the home visit the social worker started spewing about children sometimes look like they have autism when they are just speech and languaged delayed. I corrected her then, and the autism specialist mentioned that Emily is probably just modeling her brother. (Eyeroll)

I am just so overwhelmed.

Emily's conversation about shoes

Today has been a trying day. I am tired. I am tired of being licked, sniffed, snotted on, bashed in the head, screamed at, kicked, and otherwise pummeled. I am tired of worrying. Tired of doctors. Tired of recurring GI issues. Tired of schools. Tired of stares. Just flat out tired. Today, all I can do is just pray and give the Lord 100% of all of this. I don't have any strength of my own to do this anymore...not that I ever did. Then the Lord gave me the following dose of perspective, and it made my day:

Today was also a terrible allergy day for Alex, so I decided to keep him inside. Laura wanted to go out, and while Alex was occupied with schoolwork, I let her go out back. Emily, stripped to the diaper, also wanted to go outside. She has been uber cranky today and did not nap, so I kept trying to get her to make her lay down. (Not to mention that I am weary to the core and not up to chasing her around the yard.) She kept leading me by the hand to the back door, saying, "C'mon Ma!" She finally got distracted. A while later, she came up to me with this look--like a lighbulb moment. "Shoes!" she said happily. "Shoes, shoes, shoes! C'mon Ma! Shoes! One...Two...Three! Bye! Bye! Let's go! Shoes...NOW! One...Twoooooooo!"

She was desperately trying to tell me that she needed shoes in order to go outside because she thought that was the reason I was keeping her in. She was recalling all the scripts she has ever heard about shoes, and relaying them to me to make me understand. Almost everyday, I tell the kids, "Shoes! Shoes! Shoes! Everybody get your shoes on!" If the kids are moving sluggishly, and I need to get them out the door, I count "One. Two. Three! Bye-bye guys! I'm going!" Or I'll say, "Let's go!" Or if things get really hairy, "Shoes! NOW!" And if all of this fails, I use my old One Two Three Magic line, "One...Twoooooooooooooo!" (I rarely have to get to three. It is a beautiful system.) Emily was quoting me...with meaning!

It took me a minute to realize what had just happened, but the moment it sunk in, it was profound.

And three makes a complete set

I took the kids back to the developmental pedi for Laura's appointment. She has some great social skills, but she is also on the spectrum. She will also have more learning difficulties than Alex and probably Emily. It hurts, even though I can't say I was surprised. I was hopeful that she would not be on the spectrum--her oddness is nothing like the other two--but here we are. She *is* a princess. She eats, sleeps, drinks, dreams princess stuff. It is so cute that I forget that this level of obsession isn't normal. But, what is cute for a 5.5 year old will not be cute in a few years.

On the other hand, I had the most wonderful exchange with Emily today! She sat on my lap and had a conversation with me! A first! She was feeding a tiny toy dog some pretend cookies and cocoa on a tray, and here is our exchange:

Me: Emily, what is that? Is it a cookie?
Em: Yeah! Cookie!
Me: Is this a cookie? (Pointing at the cocoa)
Em: YES!
Me: No, that's not a cookie! (Tickling)
Em: There's a cookie! (Pointing at a box of cracker)
Me: Silly girl, that's a cracker!
Em: Nooooooooooo, cooooooooooookie!
Me: Nooooooooooo, cracker!
Em: CWACKER!

This was just music to my ears!